Hi everyone!

I am new to all of this, but a friend suggested this site to me as he has found it exceedingly helpful in addressing some of his own questions/concerns re: his jpouch. I hope you'll excuse what comes next: me sharing what I've been going through in the hopes that some of you can relate. (Not that I would wish this on anyone, but...)

I had a permanent ileo done in May 2008; pathology came back and it turns out that I actually have UC instead of Crohn's. So, the potential of having a reversal was floated by my GI. However, I got sick the fall of 2008 and have been undergoing tests for the last year or so. After rounds of the lovely prednisone, several diagnostic tests and a lot of pain meds, they think that I have Primary Sclerosing Cholangitis (PSC). (The human body: the gift that just keeps on giving!) So, while I'm trying to come to terms with having another chronic condition, my GI and I have decided to go ahead with the reversal. I have my second surgery in August and if all goes well, we'll do the takedown later this year. My GI has mentioned that people with PSC have a higher probability of pouch failure, and a much higher probability of pouchitis.

I was just wondering if there was anyone else on the forum who can relate to the added complication of PSC. Has it caused anyone's pouch experience to be exceedingly different? Apologies in advance if there was already a discussion on this topic - I only browsed through the site and forum for about an hour prior to posting this.

Thanks in advance.
In much solidarity,
crapbag*

*interestingly enough, the nickname pre-dated the UC...now it just seems too good to pass up! please excuse the vulgarity in advance...

crapbag,

I too have PSC. My GI did not mention anything about it affecting my pouch at all. However, mine has been under control with Urso since my diagnosis. It may be a problem if you have a more severe condition. My diagnosis was enough to get me to quit drinking (this was when I still had a colon).

There is a long standing support group on Yahoo Groups for PSC, might be worth checking out.

Wish I could provide more input, but I have never really had a problem with PSC, they diagnosed me through blood tests.

Many studies show that there is an increased risk of pouchitis (approximately double in some studies) in ileal pouch patients with PSC. However, this more recent study (2008) found no difference in the incidence of pouch failure.

http://www.ncbi.nlm.nih.gov/pubmed/18253951

To make the issue more confusing, there are conflicting reports. In this other recent study (also 2008), there was no finding of increased pouchitis with PSC diagnoses.

http://www.ncbi.nlm.nih.gov/pubmed/18266037

I like this study by the Cleveland Clinic (2005) because the subjects in the study are case-matched so that the primary variable is whether or not they had PSC. While it unfortunately highlights the fact that those with PSC have a lower long term survival rate (obviously due to the increased risk of liver failure and cancer), it also points out that there was similar function and quality of life between the two groups after j-pouch surgery.

http://www.ncbi.nlm.nih.gov/pubmed/16269291

For all of us, the risk of pouchitis increases with time, which might seem counterintuitive, because we tend to think that the further from the surgery date we get, the less likely that complications like pouchitis will occur.

Jan

I have PSC also and my pouch has been very challenging for 14 years. I have had mild pouchitits and cuffitis for a very long time and antibiotics do not improve my condition. I am on Ursodiol and so far I have not had any symptoms for PSC. I am dreading it but will deal with it when it arrives. Ugh!!!